Fertility Among Female Survivors of Childhood, Adolescent, and Young Adult Cancer: Protocol for Two Pan-European Studies (PanCareLIFE).

van den Berg, Marleen; van Dijk, Marloes; Byrne, Julianne; Campbell, Helen; Berger, Claire; Borgmann-Staudt, Anja; Calaminus, Gabriele; Dirksen, Uta; Winther, Jeanette F; Fossa, Sophie D; Grabow, Desiree; Grandage, Victoria L; van den Heuvel-Eibrink, Marry M; Kaiser, Melanie; Kepak, Tomas; Kremer, Leontien C; Kruseova, Jarmila; Kuehni, Claudia E; Lambalk, Cornelis B; van Leeuwen, Flora E; ... (2018). Fertility Among Female Survivors of Childhood, Adolescent, and Young Adult Cancer: Protocol for Two Pan-European Studies (PanCareLIFE). JMIR research protocols, 7(9), e10824. JMIR Publications 10.2196/10824

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BACKGROUND Despite a significant number of studies on female fertility following childhood, adolescent, and young adult (CAYA) cancer, studies establishing precise (dose-related) estimates of treatment-related risks are still scarce. Previous studies have been underpowered, did not include detailed treatment information, or were based on self-report only without any hormonal assessments. More precise assessments of who is at risk for sub- or infertility are needed. OBJECTIVE The objective of our study is to describe the design and methods of 2 studies on female fertility (a cohort study and a nested case-control study) among female survivors of CAYA cancer performed within the European PanCareLIFE project. METHODS For the cohort study, which aims to evaluate the overall risk of fertility impairment, as well as the risk for specific subgroups of female CAYA cancer survivors, 13 institutions from 9 countries provide data on fertility impairment. Survivors are defined as being fertility impaired if they meet at least one of 8 different criteria based on self-reported and hormonal data. For the nested case-control study, which aims to identify specific treatment-related risk factors associated with fertility impairment in addition to possible dose-response relationships, cases (fertility impaired survivors) are selected from the cohort study and matched to controls (survivors without fertility impairment) on a 1:2 basis. RESULTS Of the 10,964 survivors invited for the cohort study, data are available from 6619 survivors, either questionnaire-based only (n=4979), hormonal-based only (n=72), or both (n=1568). For the nested case-control study, a total of 450 cases and 882 controls are identified. CONCLUSIONS Results of both PanCareLIFE fertility studies will provide detailed insight into the risk of fertility impairment following CAYA cancer and diagnostic- or treatment-related factors associated with an increased risk. This will help clinicians to adequately counsel both girls and young women, who are about to start anticancer treatment, as well as adult female CAYA cancer survivors, concerning future parenthood and to timely refer them for fertility preservation. Ultimately, we aim to empower patients and survivors and improve their quality of life. REGISTERED REPORT IDENTIFIER RR1-10.2196/10824.

Item Type:

Journal Article (Further Contribution)


04 Faculty of Medicine > Pre-clinic Human Medicine > Institute of Social and Preventive Medicine (ISPM)

UniBE Contributor:

Kühni, Claudia


600 Technology > 610 Medicine & health
300 Social sciences, sociology & anthropology > 360 Social problems & social services
000 Computer science, knowledge & systems > 020 Library & information sciences




JMIR Publications




Doris Kopp Heim

Date Deposited:

15 May 2019 08:38

Last Modified:

15 Apr 2020 15:17

Publisher DOI:


PubMed ID:


Uncontrolled Keywords:

case-control study childhood cancer cohort study female fertility late effects





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